Dear Mr. Sparks,
My name is Amanda Rhodes and I am the mother of a very special Cherub, Caleb Michael. It all started when my husband, Jackie, and I decided we were ready to have a child after three years of marriage. We had had an unexpected pregnancy and miscarriage during our first year and decided we had waited long enough and were ready. I got pregnant during May of 1999. I took a home test and it was positive on our 3 year wedding anniversary. We were so excited but so nervous because of the last pregnancy so decided not to tell anyone until I went to the doctor and it was totally confirmed. We only told our family and our closest friends. I teach special education and didn't tell any of my colleagues until we returned to school in the fall. My pregnancy started off so normal. I coach and was traveling a lot for basketball camps and was so sick and so tired. At 20 weeks we were to have a second ultrasound. The first was to confirm the pregnancy and see the heartbeat. My doctor said everything looked fine however our little boy had clorid plexus cyst in his brain. He said not to worry they are common but he was going to send us on for a level 2 ultrasound because they can be related to other problems. At 21 weeks we went not knowing our world would be shattered. I had research clorid plexus cyst and wasn't worried but as we started the ultrasound I knew we had problem. The doctor informed us that our son had Dandy Walker Malformation. a blockage in the fourth ventricle of the brain causing the cerebral spinal fluid not to flow properly and could be helped with a shunt after birth. He then showed us the hernia and the stomach and heart pushed up into his diaphragm. We then did an amniocentesis to check for chromosomal defects. After a week and a half of waiting, it came back normal. Good, the stuff that couldn't be repaired was okay, let's get these others fixed. Over the next three months, my amniotic fluid levels rose up into the mid 40s. I went back every week for an ultrasound because Caleb started gaining fluid in his belly and he was at high risk for cardiac arrest. I was still working at school, researching everyday, and praying that all would be okay. We thought we were in good shaped because the hernia was on the opposite side of the liver and it had not grown any. They warned me that I could go into pre term labor because of my fluid levels. We decided to deliver and proceed with the hernia surgery in Winston-Salem, NC which is 3 hours away from Bristol, TN because of the better technology and their familiarity with this situation. Then one day at school it happened. I went to the bathroom and began bleeding. I called my doctor and he instructed me to go to the hospital. He checked me and I had dilated 2cm and was having minor contractions. I was transported to a bigger hospital with my other doctor who had discovered the hernia. By the time I got there I had dilated to 3 and needed to be transported to NC.I was med-flighted to NC and there they stopped my labor. I was put on complete bed rest for the next 2 weeks. The next time I went into labor on December 1, 1999 and did not realize it until I was dilated to 6cm and they could not stop the labor. Caleb Michael Rhodes was born at 3:11am on Dec. 2 at 32 weeks. He weighed 4 lbs 5 oz and was a strapping 18 1/2 inches long. He put up a good fight but his lungs had been compressed so much by the hernia, and his trachea was so bent from the hernia, that they could not ventilate or save our sweet precious son. We were able to hold him, say hello and goodbye to him all in the same day. He fought for 3 1/2 hours and died early Thursday 12/2/99 morning. We never thought we'd come home without him. We are still waiting for results of the autopsy because the doctors believe there was another syndrome associated with diaphragmatic hernias. God put Caleb into our life for such a short time but in that short time he changed and enriched all of the lives of the ones who fought the fight with him. Thank you for letting us share our story of our son.
Sincerely,
Caleb's parents, Amanda and Jackie Rhodes (Tennessee)
My name is Amanda Rhodes and I am the mother of a very special Cherub, Caleb Michael. It all started when my husband, Jackie, and I decided we were ready to have a child after three years of marriage. We had had an unexpected pregnancy and miscarriage during our first year and decided we had waited long enough and were ready. I got pregnant during May of 1999. I took a home test and it was positive on our 3 year wedding anniversary. We were so excited but so nervous because of the last pregnancy so decided not to tell anyone until I went to the doctor and it was totally confirmed. We only told our family and our closest friends. I teach special education and didn't tell any of my colleagues until we returned to school in the fall. My pregnancy started off so normal. I coach and was traveling a lot for basketball camps and was so sick and so tired. At 20 weeks we were to have a second ultrasound. The first was to confirm the pregnancy and see the heartbeat. My doctor said everything looked fine however our little boy had clorid plexus cyst in his brain. He said not to worry they are common but he was going to send us on for a level 2 ultrasound because they can be related to other problems. At 21 weeks we went not knowing our world would be shattered. I had research clorid plexus cyst and wasn't worried but as we started the ultrasound I knew we had problem. The doctor informed us that our son had Dandy Walker Malformation. a blockage in the fourth ventricle of the brain causing the cerebral spinal fluid not to flow properly and could be helped with a shunt after birth. He then showed us the hernia and the stomach and heart pushed up into his diaphragm. We then did an amniocentesis to check for chromosomal defects. After a week and a half of waiting, it came back normal. Good, the stuff that couldn't be repaired was okay, let's get these others fixed. Over the next three months, my amniotic fluid levels rose up into the mid 40s. I went back every week for an ultrasound because Caleb started gaining fluid in his belly and he was at high risk for cardiac arrest. I was still working at school, researching everyday, and praying that all would be okay. We thought we were in good shaped because the hernia was on the opposite side of the liver and it had not grown any. They warned me that I could go into pre term labor because of my fluid levels. We decided to deliver and proceed with the hernia surgery in Winston-Salem, NC which is 3 hours away from Bristol, TN because of the better technology and their familiarity with this situation. Then one day at school it happened. I went to the bathroom and began bleeding. I called my doctor and he instructed me to go to the hospital. He checked me and I had dilated 2cm and was having minor contractions. I was transported to a bigger hospital with my other doctor who had discovered the hernia. By the time I got there I had dilated to 3 and needed to be transported to NC.I was med-flighted to NC and there they stopped my labor. I was put on complete bed rest for the next 2 weeks. The next time I went into labor on December 1, 1999 and did not realize it until I was dilated to 6cm and they could not stop the labor. Caleb Michael Rhodes was born at 3:11am on Dec. 2 at 32 weeks. He weighed 4 lbs 5 oz and was a strapping 18 1/2 inches long. He put up a good fight but his lungs had been compressed so much by the hernia, and his trachea was so bent from the hernia, that they could not ventilate or save our sweet precious son. We were able to hold him, say hello and goodbye to him all in the same day. He fought for 3 1/2 hours and died early Thursday 12/2/99 morning. We never thought we'd come home without him. We are still waiting for results of the autopsy because the doctors believe there was another syndrome associated with diaphragmatic hernias. God put Caleb into our life for such a short time but in that short time he changed and enriched all of the lives of the ones who fought the fight with him. Thank you for letting us share our story of our son.
Sincerely,
Caleb's parents, Amanda and Jackie Rhodes (Tennessee)
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